Dear Rene
As you know I am trying to find a doctor who would be able to prescribe me either Keytruda or Optivo.
I just had a consultation with an oncologyst in Poland who told me that there are no research showing that Keytruda will help with Synovial Sarcoma.
He also said that if I want the best results I should be taking Keytruda together with Optivo.
Am I right to say that he is completely wrong as Keytruda and Optivo are the same drugs - PD-1 inhibitors and if anything he should have suggested taking Keytruda or Optivo with Yervoy?
Is it the ignorance of the doctors or they just do not want to share the knowledge they have?
I am having another meeting in London so fingers crossed it will be different.
Thank you
Urszula
1) "no research showing that Keytruda will help with Synovial Sarcoma":
This statement is true in the sense that there is no clinical trial data showing that Keytruda (or any other checkpoint inhibitor, for that case) works for synovial sarcoma. It will be a long time coming before there are trial results published. However, just because there are no clinical trial data results does not mean it is not effective. The doctor may have pointed this out to you so you understand the risks - that checkpoint inhibitors are not "proven" for synovial sarcoma via clinical trials yet.
Researchers and doctors at the forefront of immunotherapy research believe that sarcomas are responsive to immunotherapy, as reflected by the fact that there are checkpoint inhibitor trials running for sarcomas, even though there are so few sarcoma patients as compared to other cancers, such as this one: https://clinicaltrials.gov/ct2/show/NCT02815995.
2) "He also said that if I want the best results I should be taking Keytruda together with Optivo."
Most likely the oncologist confused the names. It's well established that combining anti-PD1 (Keytruda or Opdivo) with CTLA4 (Yervoy) has greater benefit than just one treatment alone.
Dear Rene
I just had a very successful meeting with one of the oncologist in London who agreed to give me Keytruda as a treatment.
I asked him if we could do first cryoblation of my tumors. He did refer me to one of the ablation specialists in London but he said he would like me to start Keytruda first and then do the ablation of the tumors.
I just wanted to know your opinion on this as I believe you were suggesting cryo to be done first.
He did say that he would give me one treatment of Keytruda and then we would move with cryoblation.
He also mentioned that we would possibly do other type of ablations. He was not sure why I was so keen on cryo against other ablations.
He mentioned radiofrequency and nano knife.
My question is - does it matter if I will have one treatment of Keytruda first and then cryo?
Also are other types of ablation less effective than cryo?
If I had a possibility of injecting Keytruda directly into the tumor, should I go for it?
Should I be doing anything else along with these 2 treatments?
There is a SPEAR T cell therapy trials going on in UK that are targeting NY-ESO antigens. Would it help to o that as well?
Thank you so much in advance
Urszula
Q1 - does it matter if I will have one treatment of Keytruda first and then cryo?
A1 - We favor doing treatment that generates T cells first (cryoablation), then the systemic treatment (checkpoint inhibitors) - details in Chp 11, section "Devising a Combination Strategy".
Q2 - Also are other types of ablation less effective than cryo?
A2 - Please see this forum thread: http://curingcancerbook.com/cryoablation-large-tumours
Q3 - If I had a possibility of injecting Keytruda directly into the tumor, should I go for it?
A3 - The advantages of this are discussed in Chp 16, section "Think out of the box"
Q4 - Should I be doing anything else along with these 2 treatments?
A4 - *Do not* take high dose fish oil along with these treatments.
Q5 - There is a SPEAR T cell therapy trials going on in UK that are targeting NY-ESO antigens. Would it help to o that as well?
A5 - Chp 6 explains T cell therapies - Heather received NY-ESO-1 T cells. See Table 3 (Chp 16) for the purpose of various immunotherapies - you would ideally want to do treatments that mobilize different aspects of the immune response.
Hi Urszula
I would love to hear how you are getting on, and what doctor you saw or where you went in London please?
Thanks
Hi
Apologies for the late reply but I have been recovering from another nano knife ablations and it has been difficult. I have been in quite a lot of pain.
Well my treatment has been delayed because of the liver enzymes so I am still waiting for it to go down.
Nano knife procedure I had with prof Edward Leen in Princess Grace Hospital in London.
I had Keytruda treatment with prof Stebbing in Cromwell Hospital.
While I was on threatment new tumors appeared which is not a great sign and this is why we want to add Yervoy to the mixture. But as I said high liver enzymes are making me wait. I will be having a new blood tests done tomorrow and hopefully I will be able to start new treatment soon.